Well, it finally happened...last Wednesday (the 15th) my hair started falling out. Actually, I pulled and it came right out. By Thursday it was pretty patchy so I went to Sport Clips (move over guys) and had them take it as short as they could then came home and had Teri shave my head with an electric razor. I look like my brother, without his beard!
Besides not liking the patchy look, my scalp was kind of itchy and just weird feeling -- almost a "crawling" feeling. With it shaved, the scalp doesn't have that feeling...thankfully!
This past week hasn't been bad symptom-wise. Had a couple of days that was like a really bad Fibromyalgia flare up. This next week is a week off. I will have 3 weeks on and 1 week off for 2 more cycles.
Good news today, my son, daughter-in-law, and granddog are coming for Christmas. For the first time in about 10 years my whole family will be together...what a great gift that is!!!
Hope you all have a wonderful Christmas!
Namaste.
Jan
Wednesday, December 22, 2010
Monday, December 13, 2010
Chemo Update
Sorry it has been so long between updates...sometimes we just need a break from thinking about all the details.
Chemo started on the 30th of November...Abraxane once a week for 12 weeks...2 down 10 to go. One of the reasons it took so long for me to write about it is because the first session sucked. Isabella (granddaughter) couldn't be in the child care for more than 2 hours. I had to be there at 1pm for a chest xray, 2pm for blood work (where Isabella couldn't be because she isn't 12), then 4pm for chemo. Well, the 4pm for chemo stretched until almost 6:30pm. Hurt like heck when they tried to access my port -- one lady tried twice then called another person who got it the first time. They no sooner got the IV going and I started feeling weird...then I realized that it was withdrawals from the pain meds I take at night. (This wouldn't have been a problem had they been on schedule!) Let's just say I was stressed because it was the first time and even with all my reading I wasn't sure what to expect, then on top of that I was stressed that they were running so far behind and we had Isabella to worry about. It all worked out but I was maxed out on the stress scale.
Second session was the total opposite! I went by myself and there were only 2 patients when I got the the chemo floor...AND they called me back prior to my actual appointment time! The guy accessed my port on the first try and I just hung out. On top of this being a much better experience, I also got the most awesome bag at the gift shop for carrying my quilt and other paraphernalia (shopping always makes things extra special!!).
This Tuesday, Teri thinks she may have a babysitter but the person's kid got quite sick on Sunday so now we aren't sure. It really isn't a big deal for me to go alone at this point because I am not getting real sick from it.
I found out that MD Anderson has a beauty salon/barber shop that provides free hair cuts (don't really need that) and also wigs. I am thinking that I may go early on Tuesday so that I can check out the wig selection...never know, I might like the mullet look that my friend Kristin passed up!!!
As far as side effect from chemo, they have been mild thus far (hopefully I am not jinxing myself by saying that!). Most of the symptoms are ones I have experience due to other health issues present long before cancer (irritable bowel syndrome and fibromyalgia). The FDA in their infinite wisdom has now banned Darvon (MD Anderson's drug of choice for pain relief) so the doc has prescribed tramadol (Ultram) and that pretty well takes care of the fibromyalgia type symptoms. The other is handled by imodium.
The one side effect I was hoping to avoid was loss of taste. No such luck! Everything was fine until the morning after the last session. I got up Wednesday, got a cup of coffee, peeled a banana and sat down for breakfast...the only problem was that if my eyes had been closed I would not have known what the mush was in my mouth. So this week has been about trying to find things that have at least some flavor -- for example, we had leftover potato soup. I put sour cream on top and I could taste that but the only "potato" taste was that of the skins...weird! By Saturday more tastes were coming back but still a little off. I saw a recipe (with picture) of skillet tacos that looked great...Teri made it and I could actually get some tastes. Needless to say I scarfed it down. Payed for it the next day with the ol' IBS flaring up. Was it worth it? You bet!!
Another challenge is fatigue. I am letting myself adhere to my natural body rhythms (I am naturally a night owl so I am staying up late and getting up late -- but still getting my normal 6 hours) but find there is an element of fatigue no matter what. This falls under what I am now calling "chemo normal"...the day after the infusion is the worst.
Today was a GREAT day. I had a lot of energy (must be all that resting I have been doing!) so I went to the Christmas party my dog trainer throws every year and took Abby (the Chinese Crested). One reason I really wanted to go was because Abby needed the outing and I wanted to give her the chance to run the obstacle course again. OMG...we hadn't done that in about 2 years and she was so excited and ran it like she had been doing it every day! It was such a joy to see her joyfulness!! She had never done the teeter totter before but she did it like she had always done it...then she jumped a jump that high enough for a dog twice her size. For me it was great because I could actually run the course with my new knee...prior to knee replacement it was more like a hobble than a run!!
After the party a friend of mine and I went browsing for baby stuff because she just found out she is preggers. She isn't ready to buy but wanted to get some ideas (first baby at 39!). I, on the other hand, bought Isabella's toddler bed and a matching toy chest -- fairies theme of course!! Teri and I went in together to get the toddler bed for her as one of her Christmas presents. Talk about JOY!!! when she saw the box she just started saying "nite nite"...and for her first night in a big girl bed she just went right to bed and to sleep...amazing!! One of the coolest things about it is that Teri and I put both of them together as a team...with Teri doing most of the work but me lending a hand as needed, and of course Isabella was helping too. No really, she was. I would hand her a part and she would hand it to Teri...it was so adorable!!
We have also been busy trying to get Christmas decorations up...slow going with the fatigue factor. The other day I just muscled my way through the fatigue and got the tree in my bedroom up and decorated. It was a good feeling because I have had the tree for 3 years and this is the first time it has been up! A friend came over and put lights across the front eaves of the house. I won't bore you with the details but it is beginning to look a lot like Christmas!! (And tonight is is feeling like Christmas with lows in the 20s...brrrrr!)
So as I sit here writing this at almost 2am, I am feeling blessed. There is such wonderful love and compassion from my friends, family, and neighbors. I see everything so differently now...and that is such a wonderful blessing.
Namaste!
Jan
Chemo started on the 30th of November...Abraxane once a week for 12 weeks...2 down 10 to go. One of the reasons it took so long for me to write about it is because the first session sucked. Isabella (granddaughter) couldn't be in the child care for more than 2 hours. I had to be there at 1pm for a chest xray, 2pm for blood work (where Isabella couldn't be because she isn't 12), then 4pm for chemo. Well, the 4pm for chemo stretched until almost 6:30pm. Hurt like heck when they tried to access my port -- one lady tried twice then called another person who got it the first time. They no sooner got the IV going and I started feeling weird...then I realized that it was withdrawals from the pain meds I take at night. (This wouldn't have been a problem had they been on schedule!) Let's just say I was stressed because it was the first time and even with all my reading I wasn't sure what to expect, then on top of that I was stressed that they were running so far behind and we had Isabella to worry about. It all worked out but I was maxed out on the stress scale.
Second session was the total opposite! I went by myself and there were only 2 patients when I got the the chemo floor...AND they called me back prior to my actual appointment time! The guy accessed my port on the first try and I just hung out. On top of this being a much better experience, I also got the most awesome bag at the gift shop for carrying my quilt and other paraphernalia (shopping always makes things extra special!!).
This Tuesday, Teri thinks she may have a babysitter but the person's kid got quite sick on Sunday so now we aren't sure. It really isn't a big deal for me to go alone at this point because I am not getting real sick from it.
I found out that MD Anderson has a beauty salon/barber shop that provides free hair cuts (don't really need that) and also wigs. I am thinking that I may go early on Tuesday so that I can check out the wig selection...never know, I might like the mullet look that my friend Kristin passed up!!!
As far as side effect from chemo, they have been mild thus far (hopefully I am not jinxing myself by saying that!). Most of the symptoms are ones I have experience due to other health issues present long before cancer (irritable bowel syndrome and fibromyalgia). The FDA in their infinite wisdom has now banned Darvon (MD Anderson's drug of choice for pain relief) so the doc has prescribed tramadol (Ultram) and that pretty well takes care of the fibromyalgia type symptoms. The other is handled by imodium.
The one side effect I was hoping to avoid was loss of taste. No such luck! Everything was fine until the morning after the last session. I got up Wednesday, got a cup of coffee, peeled a banana and sat down for breakfast...the only problem was that if my eyes had been closed I would not have known what the mush was in my mouth. So this week has been about trying to find things that have at least some flavor -- for example, we had leftover potato soup. I put sour cream on top and I could taste that but the only "potato" taste was that of the skins...weird! By Saturday more tastes were coming back but still a little off. I saw a recipe (with picture) of skillet tacos that looked great...Teri made it and I could actually get some tastes. Needless to say I scarfed it down. Payed for it the next day with the ol' IBS flaring up. Was it worth it? You bet!!
Another challenge is fatigue. I am letting myself adhere to my natural body rhythms (I am naturally a night owl so I am staying up late and getting up late -- but still getting my normal 6 hours) but find there is an element of fatigue no matter what. This falls under what I am now calling "chemo normal"...the day after the infusion is the worst.
Today was a GREAT day. I had a lot of energy (must be all that resting I have been doing!) so I went to the Christmas party my dog trainer throws every year and took Abby (the Chinese Crested). One reason I really wanted to go was because Abby needed the outing and I wanted to give her the chance to run the obstacle course again. OMG...we hadn't done that in about 2 years and she was so excited and ran it like she had been doing it every day! It was such a joy to see her joyfulness!! She had never done the teeter totter before but she did it like she had always done it...then she jumped a jump that high enough for a dog twice her size. For me it was great because I could actually run the course with my new knee...prior to knee replacement it was more like a hobble than a run!!
After the party a friend of mine and I went browsing for baby stuff because she just found out she is preggers. She isn't ready to buy but wanted to get some ideas (first baby at 39!). I, on the other hand, bought Isabella's toddler bed and a matching toy chest -- fairies theme of course!! Teri and I went in together to get the toddler bed for her as one of her Christmas presents. Talk about JOY!!! when she saw the box she just started saying "nite nite"...and for her first night in a big girl bed she just went right to bed and to sleep...amazing!! One of the coolest things about it is that Teri and I put both of them together as a team...with Teri doing most of the work but me lending a hand as needed, and of course Isabella was helping too. No really, she was. I would hand her a part and she would hand it to Teri...it was so adorable!!
We have also been busy trying to get Christmas decorations up...slow going with the fatigue factor. The other day I just muscled my way through the fatigue and got the tree in my bedroom up and decorated. It was a good feeling because I have had the tree for 3 years and this is the first time it has been up! A friend came over and put lights across the front eaves of the house. I won't bore you with the details but it is beginning to look a lot like Christmas!! (And tonight is is feeling like Christmas with lows in the 20s...brrrrr!)
So as I sit here writing this at almost 2am, I am feeling blessed. There is such wonderful love and compassion from my friends, family, and neighbors. I see everything so differently now...and that is such a wonderful blessing.
Namaste!
Jan
Thursday, November 18, 2010
MD Anderson Oncology Visit
Honor your intuition! Went to MD Anderson today for an oncology consult. Isabella spent the time in the nursery and Teri went with me into my appointment. To quote Teri "it was pleasant and informative"...while I know the oncologist I have been seeing is tops in the field, it just felt right at MD Anderson. Instead of a "chemo corral" with several other women and no room for my caregiver to hang with me, MD Anderson has individual rooms and room for my caregiver. Much more aesthetically pleasing environment!
There are also so many other amenities offered: free childcare, acupuncture, meditations, other wellness modalities, support groups for caregivers (that would be Teri) and so much more.
On top of all that, the protocol they use is much less toxic. It is a bit longer, but more "body friendly"...I like that idea. That isn't to say there aren't side effects, but that longterm it is less toxic.
So, chemo will begin on November 30th at MD Anderson. There is two parts to the protocol: 1) Abraxane once a week for 12 weeks, and 2) cocktail of FEC (Fluorouracil, Epirubicin, Cytoxan) every 3 weeks for 4 cycles. That means 6 months of chemo.
All for now...Namaste!
There are also so many other amenities offered: free childcare, acupuncture, meditations, other wellness modalities, support groups for caregivers (that would be Teri) and so much more.
On top of all that, the protocol they use is much less toxic. It is a bit longer, but more "body friendly"...I like that idea. That isn't to say there aren't side effects, but that longterm it is less toxic.
So, chemo will begin on November 30th at MD Anderson. There is two parts to the protocol: 1) Abraxane once a week for 12 weeks, and 2) cocktail of FEC (Fluorouracil, Epirubicin, Cytoxan) every 3 weeks for 4 cycles. That means 6 months of chemo.
All for now...Namaste!
Friday, November 12, 2010
Chemo
Because of the problems I have had with yeast infections along my incision (thank you antibiotics and diabetes!) my chemo won't start until Dec. 1 to give me more healing time. The added plus is that I won't be feeling like crap for my birthday!
I have also decided to get a second opinion for my chemo and have an appointment on the 18th with MD Anderson. There are a lot of positives about going there for chemo. On the downside, it is further from home and I will have to pay for parking. Anyway...I also just want to make sure that the course of chemo my current oncologist is recommending is indeed the best. (Oh, my insurance won't pay for any part of the clinical trial so I won't be participating. It is amazing anyone is able to participate.)
Have been going through some withdrawal issues with the medication I have been on. Besides the vicodin, I was also taking a nerve pain med...that is the one giving me the issues. Rather ticked me off because nothing was said about withdrawals. Thankfully, the vicodin has helped mitigate them; however, I also am going to need to ween off of the vicodin as well. Have I mentioned I don't like drugs?
I went wild day before yesterday and scrubbed my kitchen floor. When I say scrubbed, this means I was on hands and knees. Let's just say that my pecs were SORE yesterday. Looks like I am going to need to work out and build up the muscles.
Namaste!
I have also decided to get a second opinion for my chemo and have an appointment on the 18th with MD Anderson. There are a lot of positives about going there for chemo. On the downside, it is further from home and I will have to pay for parking. Anyway...I also just want to make sure that the course of chemo my current oncologist is recommending is indeed the best. (Oh, my insurance won't pay for any part of the clinical trial so I won't be participating. It is amazing anyone is able to participate.)
Have been going through some withdrawal issues with the medication I have been on. Besides the vicodin, I was also taking a nerve pain med...that is the one giving me the issues. Rather ticked me off because nothing was said about withdrawals. Thankfully, the vicodin has helped mitigate them; however, I also am going to need to ween off of the vicodin as well. Have I mentioned I don't like drugs?
I went wild day before yesterday and scrubbed my kitchen floor. When I say scrubbed, this means I was on hands and knees. Let's just say that my pecs were SORE yesterday. Looks like I am going to need to work out and build up the muscles.
Namaste!
Tuesday, October 26, 2010
PET/CT Scan and other things...
So yesterday I took matters into my own hands and went to the imaging place and got the report for my PET/CT scan (I do not have the patience to wait until next week to see my doctor). Finally, good news!!! No signs that the cancer has spread...at least nowhere in my torso...YEAH!!! WOOOHOOO!!! ...Haven't checked my brain yet...that, I believe would be an MRI...which hasn't been ordered and not sure what the plan is for that.
Today I went for my echocardiogram to make sure my heart muscle is strong enough to handle the chemo drugs. Again, won't get this result until next week. With this one, I am not so worried because I know my heart is strong.
I am actually going to try to sleep in my bed tonight for the first time in a month...my recliner is sooooo comfy though!! We'll see how it goes.
The other good news is that I went all day yesterday and now all day today without pain meds...YEAH!! I am still taking my nerve pain meds and vicodin at night to ensure I sleep well.
I have a big adventure tomorrow...totally not cancer related but still health related. I am an ambassador for the Diabetes Association and will be speaking at the Red Strider (those living with diabetes) kick off dinner tomorrow evening. Shouldn't be too taxing since I am not speaking long...drive downtown, eat, speak, come home...piece of cake.
That's it for now...no other doctor appointments this week...another YEAH!!
Namaste.
Today I went for my echocardiogram to make sure my heart muscle is strong enough to handle the chemo drugs. Again, won't get this result until next week. With this one, I am not so worried because I know my heart is strong.
I am actually going to try to sleep in my bed tonight for the first time in a month...my recliner is sooooo comfy though!! We'll see how it goes.
The other good news is that I went all day yesterday and now all day today without pain meds...YEAH!! I am still taking my nerve pain meds and vicodin at night to ensure I sleep well.
I have a big adventure tomorrow...totally not cancer related but still health related. I am an ambassador for the Diabetes Association and will be speaking at the Red Strider (those living with diabetes) kick off dinner tomorrow evening. Shouldn't be too taxing since I am not speaking long...drive downtown, eat, speak, come home...piece of cake.
That's it for now...no other doctor appointments this week...another YEAH!!
Namaste.
Sunday, October 24, 2010
Yesterday the 3 generations that make up our household went on an adventure to the punkin patch. We decided to go to Halter, Inc.'s patch this year because it was closer to home, smaller, and they are a non-profit providing therapy animals for special needs kids. We had a great time! Isabella went on two pony rides and acted like she had been doing it all her short life! Cows and goats in the petting zoo were well loved by her as she gave them all hugs and left the feeding to grammie and mommie. The best part was that it was small enough that I didn't get too tired, yet big enough that we all had a great time.
I am having a bit of a struggle today because it seems as though I should be feeling much better by now. It feels as though I am wearing a bra that is about 4 sizes too small! Was hoping to be off pain meds by now but not so much ready yet. I am trying to work on arm movements by stretching and reaching...seems to be helping. The whole chest area still feels like a major sunburn...mostly when I move.
Getting my head shaved this past week has been a rather freeing experience...almost thinking this might be the way to go after all this is over...easy care, no worries about your hair blowing into your eyes, shampoo lasts a really long time! There is no end to the benefits!!
I think Teri and I are going to try to do a little halloween decorating in the front yard this week. A friend is coming to help hang the decorations that require a ladder. It is a bit difficult getting into the mood for Halloween when it has been 90 this past week and we are expecting it again this week. Cool front coming this Wednesday -- for those who don't live in Houston that means we will be in the 80s. So those of you in the north, please send some fall-like weather our direction! Oh yeah...pumpkin carving tomorrow...can't wait because that also means roasting the seeds!!
Ok, so I don't recommend this as a weight-loss method, but I have lost about 17 pounds. I think about 10 from the surgery then the rest because I am not drinking sodas and eating reasonable portions...we also haven't been eating restaurant food nearly as much. Teri is cooking delicious, nutritious, healing meals for us and it has been AWESOME!! If the excess fluid that is sloshing around in my chest ever gets re-absorbed, maybe I will lose even more.
For those of my friends who are overweight, do yourself and your families a favor -- LOSE WEIGHT. Not for the looks but for all the risk factors. Did you know it is a risk factor for cancer? I didn't until I got cancer. I knew about diabetes and heart disease...but not cancer. While I make look and sound brave, or strong or whatever you want to say...you do NOT want to go through this. Do what you can to reduce your risk factors...eat right, exercise, and know your health. Ok...I'll get off my soapbox now.
So this week brings an echocardiogram. I am not scheduled to see my oncologist again until the 3rd but I am going to try to get in earlier so I can get the results of the PET scan. Will keep y'all posted!
Night...and Namaste!
I am having a bit of a struggle today because it seems as though I should be feeling much better by now. It feels as though I am wearing a bra that is about 4 sizes too small! Was hoping to be off pain meds by now but not so much ready yet. I am trying to work on arm movements by stretching and reaching...seems to be helping. The whole chest area still feels like a major sunburn...mostly when I move.
Getting my head shaved this past week has been a rather freeing experience...almost thinking this might be the way to go after all this is over...easy care, no worries about your hair blowing into your eyes, shampoo lasts a really long time! There is no end to the benefits!!
I think Teri and I are going to try to do a little halloween decorating in the front yard this week. A friend is coming to help hang the decorations that require a ladder. It is a bit difficult getting into the mood for Halloween when it has been 90 this past week and we are expecting it again this week. Cool front coming this Wednesday -- for those who don't live in Houston that means we will be in the 80s. So those of you in the north, please send some fall-like weather our direction! Oh yeah...pumpkin carving tomorrow...can't wait because that also means roasting the seeds!!
Ok, so I don't recommend this as a weight-loss method, but I have lost about 17 pounds. I think about 10 from the surgery then the rest because I am not drinking sodas and eating reasonable portions...we also haven't been eating restaurant food nearly as much. Teri is cooking delicious, nutritious, healing meals for us and it has been AWESOME!! If the excess fluid that is sloshing around in my chest ever gets re-absorbed, maybe I will lose even more.
For those of my friends who are overweight, do yourself and your families a favor -- LOSE WEIGHT. Not for the looks but for all the risk factors. Did you know it is a risk factor for cancer? I didn't until I got cancer. I knew about diabetes and heart disease...but not cancer. While I make look and sound brave, or strong or whatever you want to say...you do NOT want to go through this. Do what you can to reduce your risk factors...eat right, exercise, and know your health. Ok...I'll get off my soapbox now.
So this week brings an echocardiogram. I am not scheduled to see my oncologist again until the 3rd but I am going to try to get in earlier so I can get the results of the PET scan. Will keep y'all posted!
Night...and Namaste!
Wednesday, October 20, 2010
Sloshing
Ok, I have a new definition for gross: when I move my arm away from my body then back against my side and I hear the fluid gurgle in my chest...now that is gross!! There is nothing worse than hearing fluid slosh around inside you! Ok, there may be worse things but where I am right now...this is it.
I did check with the doctor and it is normal...the fluid will be re-absorbed. There are certain conditions that would indicate he needs to drain it but I don't have any of those right now...fingers crossed!!
I did check with the doctor and it is normal...the fluid will be re-absorbed. There are certain conditions that would indicate he needs to drain it but I don't have any of those right now...fingers crossed!!
Tuesday, October 19, 2010
Drains are out!
I just have to say it...sometimes it feels like I will never feel "normal" again. I KNOW I will, but man this is a slow process.
Had my drains removed yesterday -- YEAH!! -- it was NOT a pain-free experience. Not worrying about them and logging the amount of fluid draining is a good thing though. So according to the surgeon, his "work is done" ... that was quick!
I am also trying to get off the pain meds -- this is the part I hate the most. Not because I enjoy being in an altered state but because of the withdrawal symptoms...and of course the pain that seems to be at a higher level than what I would expect. Not so sure I am really ready to be off the meds.
In addition, I am still fighting the stupid yeastie beasties...will they every give up and go away?
I had read the pain described as a sunburn...I am now at that point. So right now, it feels as though my arm pits and chest feel as though they are bound by rubber bands and the skin is sunburned. My digestive tract is screwed up by the pain meds, and the yeast has taken over...yeah, this is where I want to be!
My PET scan is scheduled for Thursday to see if this bugger migrated anywhere else in my body. Next Tuesday, I have an echocardiogram scheduled to see if my heart can handle the chemo meds. Then on the 3rd it is back to the oncologist to discuss the clinical trial, insurance, and hopefully to get things scheduled.
The good news is that I am going to try to sleep in my bed tonight...YEAH!! My ankles and feet are a bit swollen so I am hoping sleeping in bed will help. (Plus I don't want to wear out my wonderful recliner!)
I want to again thank everyone for your love and support through all of this.
Namaste.
Had my drains removed yesterday -- YEAH!! -- it was NOT a pain-free experience. Not worrying about them and logging the amount of fluid draining is a good thing though. So according to the surgeon, his "work is done" ... that was quick!
I am also trying to get off the pain meds -- this is the part I hate the most. Not because I enjoy being in an altered state but because of the withdrawal symptoms...and of course the pain that seems to be at a higher level than what I would expect. Not so sure I am really ready to be off the meds.
In addition, I am still fighting the stupid yeastie beasties...will they every give up and go away?
I had read the pain described as a sunburn...I am now at that point. So right now, it feels as though my arm pits and chest feel as though they are bound by rubber bands and the skin is sunburned. My digestive tract is screwed up by the pain meds, and the yeast has taken over...yeah, this is where I want to be!
My PET scan is scheduled for Thursday to see if this bugger migrated anywhere else in my body. Next Tuesday, I have an echocardiogram scheduled to see if my heart can handle the chemo meds. Then on the 3rd it is back to the oncologist to discuss the clinical trial, insurance, and hopefully to get things scheduled.
The good news is that I am going to try to sleep in my bed tonight...YEAH!! My ankles and feet are a bit swollen so I am hoping sleeping in bed will help. (Plus I don't want to wear out my wonderful recliner!)
I want to again thank everyone for your love and support through all of this.
Namaste.
Thursday, October 14, 2010
Surgeon and Oncologist post-surgery follow up
Wow...what a week! I had wanted to post an entry on Tuesday after seeing my surgeon on Monday...but then my oncologist called at 9pm Monday night to give me the results of the final pathology (this was the test to see if my tumor was low/high risk for metastisizing and/or recurring. First...the surgeon's visit...
Can I just say I really like my surgeon! Not only is he a skilled surgeon, he is compassionate, has a great bedside manor and a great sense of humor!!
The drains (affectionately known as my "friends") are still in but will be removed next Monday. They really aren't that bad so I was really ok with that. (As a side note...a post-surgical camisole with pockets for the drains is a MUST! The one day I wore a regular cami was the pits having to deal with the drains...with the cami, they have their little spot and all is right with the world). Best part of the appointment was when he said the pathology report was good. While there were some surprises (at least for me) there wasn't any boogie monsters that showed up. YEAH!! So I go see him in next Monday for drain removal (will miss my little friends -- not!) and a re-check of the yeastie beasties (yes, still dealing with that).
So, Monday was an awesome day...until 9pm when my oncologist called.
Dr. Holmes is awesome...how many doctors would call at 9pm to let you know the results of your tests? I was, after all, going to see her on Wednesday.
As good as the surgeon's news was, the oncologist's news wasn't. The tumor may be small but it is a nasty one. (the old "big things come in small packages" came to mind!) The tumor is a high risk tumor. This means that the chemo will need to be more aggressive than she originally was thinking just based on tumor size. So even though it is considered an "early cancer" and is small, it acts as a more aggressive larger tumor. Let me just say, if you or someone you know is going through this, request that they do a Mammaprint test to determine the risk.
This additional test enabled my doc to get me into a clinical trial for some new chemo "cocktails" for treating triple neg cancer. Had the Mammaprint not been done, the size of the tumor would have eliminated me from the trial. Never thought I would be excited about being a guinea pig!
The trial is looking at 3 different cocktails -- the standard of care (what is currently being used to treat triple negative breast cancer) and then two other variations. The great thing about cancer clinical trials is that you will as the least get the standard of care...but you may get one of the new cocktails that isn't yet available. Since triple neg falls into the 20 percent of the 80/20 rule and so has not had a lot of research done to determine good targeted therapies, I am excited to be part of the trial so that I can be whatever help in finding something that will mean a better prognosis for those of us with triple neg.
Next step is to get my PET scan to determine if there are any tumors elsewhere in my body. This could even further affect the chemo and the outcomes. Also will be having a cardiac echo to make sure my heart muscle is good because the chemo drugs can affect the heart. Beyond that, I am in the "healing phase" so will be healing for about another month before chemo starts. Some of the drugs cut off the blood supply to the tumors and will cut off the blood supply to the healing tissue (which would not be a good thing) so we need to make sure I am healed up before we start poisoning me.
Oh, I almost forgot, the official stage of the cancer is T1bN0 Stage 2. to decifer: T1b indicates the size as between 0.5 cm and 1.0 cm (mine was 1.0 cm) -- for those not versed in cm...that is a bit less than 1/2 inch. The N0 indicates the status of the lymph nodes, in my case the 0 means there is no involvement (I take the good news where I can get it!)
So, I am 2 weeks out from surgery and I am still taking pain meds including one for nerve pain.
Funny thing, the biggest thing on my mind is that I am going to need help decorating for the holidays!
Thanks again for all the great thoughts and prayers coming my way...it means a lot!!
Oh...I am posting some new pics today as well.
Can I just say I really like my surgeon! Not only is he a skilled surgeon, he is compassionate, has a great bedside manor and a great sense of humor!!
The drains (affectionately known as my "friends") are still in but will be removed next Monday. They really aren't that bad so I was really ok with that. (As a side note...a post-surgical camisole with pockets for the drains is a MUST! The one day I wore a regular cami was the pits having to deal with the drains...with the cami, they have their little spot and all is right with the world). Best part of the appointment was when he said the pathology report was good. While there were some surprises (at least for me) there wasn't any boogie monsters that showed up. YEAH!! So I go see him in next Monday for drain removal (will miss my little friends -- not!) and a re-check of the yeastie beasties (yes, still dealing with that).
So, Monday was an awesome day...until 9pm when my oncologist called.
Dr. Holmes is awesome...how many doctors would call at 9pm to let you know the results of your tests? I was, after all, going to see her on Wednesday.
As good as the surgeon's news was, the oncologist's news wasn't. The tumor may be small but it is a nasty one. (the old "big things come in small packages" came to mind!) The tumor is a high risk tumor. This means that the chemo will need to be more aggressive than she originally was thinking just based on tumor size. So even though it is considered an "early cancer" and is small, it acts as a more aggressive larger tumor. Let me just say, if you or someone you know is going through this, request that they do a Mammaprint test to determine the risk.
This additional test enabled my doc to get me into a clinical trial for some new chemo "cocktails" for treating triple neg cancer. Had the Mammaprint not been done, the size of the tumor would have eliminated me from the trial. Never thought I would be excited about being a guinea pig!
The trial is looking at 3 different cocktails -- the standard of care (what is currently being used to treat triple negative breast cancer) and then two other variations. The great thing about cancer clinical trials is that you will as the least get the standard of care...but you may get one of the new cocktails that isn't yet available. Since triple neg falls into the 20 percent of the 80/20 rule and so has not had a lot of research done to determine good targeted therapies, I am excited to be part of the trial so that I can be whatever help in finding something that will mean a better prognosis for those of us with triple neg.
Next step is to get my PET scan to determine if there are any tumors elsewhere in my body. This could even further affect the chemo and the outcomes. Also will be having a cardiac echo to make sure my heart muscle is good because the chemo drugs can affect the heart. Beyond that, I am in the "healing phase" so will be healing for about another month before chemo starts. Some of the drugs cut off the blood supply to the tumors and will cut off the blood supply to the healing tissue (which would not be a good thing) so we need to make sure I am healed up before we start poisoning me.
Oh, I almost forgot, the official stage of the cancer is T1bN0 Stage 2. to decifer: T1b indicates the size as between 0.5 cm and 1.0 cm (mine was 1.0 cm) -- for those not versed in cm...that is a bit less than 1/2 inch. The N0 indicates the status of the lymph nodes, in my case the 0 means there is no involvement (I take the good news where I can get it!)
So, I am 2 weeks out from surgery and I am still taking pain meds including one for nerve pain.
Funny thing, the biggest thing on my mind is that I am going to need help decorating for the holidays!
Thanks again for all the great thoughts and prayers coming my way...it means a lot!!
Oh...I am posting some new pics today as well.
Thursday, October 7, 2010
Yeastie Beasties and Other Tales
Went and saw one of my surgeon's partner's today. Because of my tape allergy and diabetes, I wanted them to check out the rash along the incisions to make sure everything was good. Truth-be-told, I was smelling the telltale odor of yeast around my incisions (gotta love diabetes!).
He did say it looks like there may be a bit of yeast overgrowth so to be on the safe side he prescribe a one-dose oral drug used for yeast infections. Hopefully that will nip it in the bud.
Other than that, everything is looking good. I am still draining too much to remove my drains (I affectionately call them "my friends" ... LOL). I'll see my surgeon on Monday still for the complete path report and perhaps get at least on of the drains removed.
The Dr. today did give me a "rushed" overview of the path report...you know, just enough to make me want my copy now so I can read and research my heart out some more! He didn't have the results of the low/high risk for spreading...I think the oncologist will have that one. From what I remember him telling me is that "the tumor" wasn't the only one in my right breast. I also had a patch of ductal carcinoma in situ (as opposed to invasive). Basically I had one that spreads and one that doesn't. He mentioned some other changes but I need to see the words to really digest it and then I will post it on here.
So, yesterday was one week since I went topless. A milestone I spent mostly napping. I am amazed that I felt better right after surgery than I do now (dead nerves work wonders for pain level!)...not that I feel that bad. the surprising part is that I had read about women feeling like they had "been hit by a truck then it parked on my chest." Needless to say I was happy that I didn't feel that way. WAS is the operative word in the last sentence. That woman's truck showed up at my chest! It isn't like from an abdominal incision...it is because everything is swollen and adjusting and it all just feels tight.
I did ask the doc about reaching and movements and he said that is actually a good thing to be doing...cool, I hate asking Teri to get things off the top shelf when she is shorter than I am! LOL
Have I mentioned that I really don't like waiting? The low/high risk test results are going to present me with some perplexing decisions to make (of course "my gut" will be playing a major role in the decisions). What will the results really mean anyway? If I went strictly by the numbers (by that I mean if my body followed the research and risk models), I wouldn't have had breast cancer...let alone triple neg. Would that mean that if I played by the rules (which I obviously don't) a "low" would mean I probably wouldn't need chemo and a "high" would mean I need to throw everything at it. Since playing by the rules isn't something I seem to be doing, it will be interesting to see how the results compare to reality.
Talking with Teri today -- have I mentioned how awesome she has been through all of this? -- and the doctor, I am concerned that some of the cells escaped through my bloodstream (yes, clear nodes are good but that isn't the only way cancer travels). This low/high risk test will only tell me the risk, not whether it has already spread. So I think regardless of that test, I will be pushing for scans to ensure there isn't anything else lurking out there and then have chemo regardless -- the cocktail may just be different.
Speaking of Teri...she and Isabella bought me a beautifl necklace with an angel wing and pink ribbon. I can't wait to wear it but am waiting until I can actually put it on and take it off myself (arms are a bit stiff for that movement). Thanks T!
I guess I must be healing because Abby is finally getting up and laying away from me. Up until today, she literally didn't leave my side...thank goodness my recliner is a chair and a half!!
Now for today's humor...I put the dogs in the yard while I was changing...Abby started barking so I walked out into the back yard with just my pants on and drains in hand. My first thought was that I walked out without my shirt...second thought was...so what! Kinda don't have anything to see.
Namaste.
He did say it looks like there may be a bit of yeast overgrowth so to be on the safe side he prescribe a one-dose oral drug used for yeast infections. Hopefully that will nip it in the bud.
Other than that, everything is looking good. I am still draining too much to remove my drains (I affectionately call them "my friends" ... LOL). I'll see my surgeon on Monday still for the complete path report and perhaps get at least on of the drains removed.
The Dr. today did give me a "rushed" overview of the path report...you know, just enough to make me want my copy now so I can read and research my heart out some more! He didn't have the results of the low/high risk for spreading...I think the oncologist will have that one. From what I remember him telling me is that "the tumor" wasn't the only one in my right breast. I also had a patch of ductal carcinoma in situ (as opposed to invasive). Basically I had one that spreads and one that doesn't. He mentioned some other changes but I need to see the words to really digest it and then I will post it on here.
So, yesterday was one week since I went topless. A milestone I spent mostly napping. I am amazed that I felt better right after surgery than I do now (dead nerves work wonders for pain level!)...not that I feel that bad. the surprising part is that I had read about women feeling like they had "been hit by a truck then it parked on my chest." Needless to say I was happy that I didn't feel that way. WAS is the operative word in the last sentence. That woman's truck showed up at my chest! It isn't like from an abdominal incision...it is because everything is swollen and adjusting and it all just feels tight.
I did ask the doc about reaching and movements and he said that is actually a good thing to be doing...cool, I hate asking Teri to get things off the top shelf when she is shorter than I am! LOL
Have I mentioned that I really don't like waiting? The low/high risk test results are going to present me with some perplexing decisions to make (of course "my gut" will be playing a major role in the decisions). What will the results really mean anyway? If I went strictly by the numbers (by that I mean if my body followed the research and risk models), I wouldn't have had breast cancer...let alone triple neg. Would that mean that if I played by the rules (which I obviously don't) a "low" would mean I probably wouldn't need chemo and a "high" would mean I need to throw everything at it. Since playing by the rules isn't something I seem to be doing, it will be interesting to see how the results compare to reality.
Talking with Teri today -- have I mentioned how awesome she has been through all of this? -- and the doctor, I am concerned that some of the cells escaped through my bloodstream (yes, clear nodes are good but that isn't the only way cancer travels). This low/high risk test will only tell me the risk, not whether it has already spread. So I think regardless of that test, I will be pushing for scans to ensure there isn't anything else lurking out there and then have chemo regardless -- the cocktail may just be different.
Speaking of Teri...she and Isabella bought me a beautifl necklace with an angel wing and pink ribbon. I can't wait to wear it but am waiting until I can actually put it on and take it off myself (arms are a bit stiff for that movement). Thanks T!
I guess I must be healing because Abby is finally getting up and laying away from me. Up until today, she literally didn't leave my side...thank goodness my recliner is a chair and a half!!
Now for today's humor...I put the dogs in the yard while I was changing...Abby started barking so I walked out into the back yard with just my pants on and drains in hand. My first thought was that I walked out without my shirt...second thought was...so what! Kinda don't have anything to see.
Namaste.
Wednesday, October 6, 2010
GRAPHIC WARNING!!!
Alright...I don't think I will make it to the centerfold of Playboy, but I am ok with that. My first "topless" photos are being posted today. Teri is helping me document my progress through the journey of really nasty bruising and swelling back to "normal" (whatever that is!). The real question is...now that I don't technically have breasts, can I go shirtless in public? LOL...Whether I want to or not is another story.
I know there are many women out there who are very emotionally tied to their breasts...I am not one of them. I think it is important, for those of us who are willing, to share our story complete with photos. Maybe it will help lessen the trauma for everyone and help in the fight for awareness and finding a cure.
At the point of diagnosis, my feeling is that breasts become less about sex and more about being a body part. I want all my friends (yes, I said all and include men, women, and children) to know that it is ok to ask me questions, pass my name and email along to others who may need it, and even see the result (though the seeing will probably be photographic in nature for most -- though I am open to live 3-D in some cases because it is so different than looking at a photo.
One common question is if I am going to have reconstruction. For me, the answer is a simple one...No. This is a very personal choice and I have no issues with women who want reconstruction -- after all clothing fit is definitely going to be a challenge. Will I every wear falsies? Sure, there may be a time when it would be appropriate -- like in evening wear.
So, fair warning...there will be photos that some would consider graphic and there will be frank discussions.
On another note. I want to acknowledge a phenomenal group of people. A program called Good Wishes is lead by Laurie Ericksen...from their Web site:
"Good Wishes, an L. Erickson USA® program, provides a scarf or an It’s a Wrap to women and girls experiencing a thinning or loss of hair due to illness or treatment at no cost. Each scarf is a gift of hope that carries with it the support and good wishes of our staff and represents the strength and beauty of the woman or child who wears it. All Good Wishes gifts are made with CRYSTALLIZED™ - Swarovski Elements as a special symbol to honor your courage and spirit. L. Erickson USA® and France Luxe® are designer brands of the parent company The Finest Accessories® Inc."
I cannot say enough about this awesome program. Not only is the scarf I received absolutely beautiful silk, the love and support of all those involved in getting it to be is palpable. From the beauty of the silk, they workmanship, and the Swarovski Elements to the unexpected, hand-signed card with well-wishes from the staff at Good Wishes. I have included a photo of the card along with photos of the scarf. Please spread the word about this program...with both the financial and emotional cost of cancer, this is truly a welcome light! Their Web site is
http://www.franceluxe.com/i/goodwishesscarves/Good+Wishes+Scarves.html
I will be showering later and posting some updated pics tomorrow...Teri tells me the bruises look much better today. The rash from the tape is worse and the feeling is beginning to return to some areas.
Namaste.
Photos are posted on my caring bridge site at: http://www.caringbridge.org/visit/jandavidson/photos and on Facebook (if you are a friend on facebook).
I know there are many women out there who are very emotionally tied to their breasts...I am not one of them. I think it is important, for those of us who are willing, to share our story complete with photos. Maybe it will help lessen the trauma for everyone and help in the fight for awareness and finding a cure.
At the point of diagnosis, my feeling is that breasts become less about sex and more about being a body part. I want all my friends (yes, I said all and include men, women, and children) to know that it is ok to ask me questions, pass my name and email along to others who may need it, and even see the result (though the seeing will probably be photographic in nature for most -- though I am open to live 3-D in some cases because it is so different than looking at a photo.
One common question is if I am going to have reconstruction. For me, the answer is a simple one...No. This is a very personal choice and I have no issues with women who want reconstruction -- after all clothing fit is definitely going to be a challenge. Will I every wear falsies? Sure, there may be a time when it would be appropriate -- like in evening wear.
So, fair warning...there will be photos that some would consider graphic and there will be frank discussions.
On another note. I want to acknowledge a phenomenal group of people. A program called Good Wishes is lead by Laurie Ericksen...from their Web site:
"Good Wishes, an L. Erickson USA® program, provides a scarf or an It’s a Wrap to women and girls experiencing a thinning or loss of hair due to illness or treatment at no cost. Each scarf is a gift of hope that carries with it the support and good wishes of our staff and represents the strength and beauty of the woman or child who wears it. All Good Wishes gifts are made with CRYSTALLIZED™ - Swarovski Elements as a special symbol to honor your courage and spirit. L. Erickson USA® and France Luxe® are designer brands of the parent company The Finest Accessories® Inc."
I cannot say enough about this awesome program. Not only is the scarf I received absolutely beautiful silk, the love and support of all those involved in getting it to be is palpable. From the beauty of the silk, they workmanship, and the Swarovski Elements to the unexpected, hand-signed card with well-wishes from the staff at Good Wishes. I have included a photo of the card along with photos of the scarf. Please spread the word about this program...with both the financial and emotional cost of cancer, this is truly a welcome light! Their Web site is
http://www.franceluxe.com/i/goodwishesscarves/Good+Wishes+Scarves.html
I will be showering later and posting some updated pics tomorrow...Teri tells me the bruises look much better today. The rash from the tape is worse and the feeling is beginning to return to some areas.
Namaste.
Photos are posted on my caring bridge site at: http://www.caringbridge.org/visit/jandavidson/photos and on Facebook (if you are a friend on facebook).
Tuesday, October 5, 2010
Homecoming
Pete picked me up at the hospital on Friday (10.1.10) while Teri and Isabella picked up some groceries. I have been pretty zoned-out on pain meds ever since -- falling asleep in the middle of everything (eating, typing, watching TV...literally everything!).
Pete headed home on Saturday...it was great having him here...I think Teri enjoyed it a well!
Big Blue (my new recliner) is working out well. Abby (the little one) barely leaves my side and Mollie checks on me frequently.
I am SO very thankful for Teri. She has been my gofer, chef, and laundress without complaint...maybe that's because I brought her one of the big water jugs from the hospital! LOL! Seriously, she has made this much easier for me and I am grateful.
Dealing with the drains has been pretty easy...helped by the post-surgical camisole with drain pockets. The right one seems to be more productive and isn't becoming clear as quickly as the left. Called the doctor today to confirm that is normal...it is.
Swelling and bruising sucks. Sometimes it feels as though my chest has a vibrating cell on it then I realize it is the fluids draining. Weird! Teri says the bruising is a lot better today. They are turning yellow so we know they are healing.
I actually showered yesterday and then went for a little adventure to the Post Office (had to mail some stuff to Pete that didn't want to ride with him in the car...lol... and then to Walgreens (more pain meds...yeah!). It seems as though I have lots of energy...until I do something, then I am exhausted. So it is good I like to nap!
The swelling makes it feel as though the armholes of my camisole are cutting into my skin...but they are loose. Now that I am getting use to the feeling, I am realizing what it is and that it isn't actually my clothes. I do still have Teri checking to make sure though!
My oncologist had prescribed Gabapentin for nerve pain and, after I stopped taking it per directions, I can attest to the fact that it really works well!! I ended up taking one yesterday. If you, or someone you know, is facing a mastectomy, I highly recommend looking into it. The nerve firings are pretty weird and happen without warning. I had expected pain like from abdominal surgery but it isn't anything like that. I will try to figure out how to describe it and post later. For now, let's just say it is weird not having the skin and fascia connected to the muscles.
I am having my usual reaction to steri-strips on the incision (that would be a bad rash); however, the nice thing about all the nerves being cut is that I don't feel any itching from the rash (small miracles!) and hopefully the rash will be gone before the feeling returns!!
Feeling like it is time for a nap...more next time.
Namaste!
Pete headed home on Saturday...it was great having him here...I think Teri enjoyed it a well!
Big Blue (my new recliner) is working out well. Abby (the little one) barely leaves my side and Mollie checks on me frequently.
I am SO very thankful for Teri. She has been my gofer, chef, and laundress without complaint...maybe that's because I brought her one of the big water jugs from the hospital! LOL! Seriously, she has made this much easier for me and I am grateful.
Dealing with the drains has been pretty easy...helped by the post-surgical camisole with drain pockets. The right one seems to be more productive and isn't becoming clear as quickly as the left. Called the doctor today to confirm that is normal...it is.
Swelling and bruising sucks. Sometimes it feels as though my chest has a vibrating cell on it then I realize it is the fluids draining. Weird! Teri says the bruising is a lot better today. They are turning yellow so we know they are healing.
I actually showered yesterday and then went for a little adventure to the Post Office (had to mail some stuff to Pete that didn't want to ride with him in the car...lol... and then to Walgreens (more pain meds...yeah!). It seems as though I have lots of energy...until I do something, then I am exhausted. So it is good I like to nap!
The swelling makes it feel as though the armholes of my camisole are cutting into my skin...but they are loose. Now that I am getting use to the feeling, I am realizing what it is and that it isn't actually my clothes. I do still have Teri checking to make sure though!
My oncologist had prescribed Gabapentin for nerve pain and, after I stopped taking it per directions, I can attest to the fact that it really works well!! I ended up taking one yesterday. If you, or someone you know, is facing a mastectomy, I highly recommend looking into it. The nerve firings are pretty weird and happen without warning. I had expected pain like from abdominal surgery but it isn't anything like that. I will try to figure out how to describe it and post later. For now, let's just say it is weird not having the skin and fascia connected to the muscles.
I am having my usual reaction to steri-strips on the incision (that would be a bad rash); however, the nice thing about all the nerves being cut is that I don't feel any itching from the rash (small miracles!) and hopefully the rash will be gone before the feeling returns!!
Feeling like it is time for a nap...more next time.
Namaste!
Saturday, October 2, 2010
Wow!
I didn't have time to post prior to surgery that my son surprised me on Sept. 25th with a phone call at 3am asking if he could "come in." He had driven 11 hours to be with Teri and I through surgery and homecoming. Let's just say that is the best surprise a mother could have!! It has been so wonderful having a man around to help with some of my "honey do" items. I am very grateful. More than the honey do items, it was great having him spend the day after surgery with me at the hospital "just hanging around."
Then Teri, Isabella, and Wendy (Isabella's god mom and my adopted daughter) came to visit. What an awesome day!
Kevin (a good friend) and Mark (Isabella's god dad) came separately late afternoon the day of surgery. Though I was groggy and dozing off during our conversations, it was great to have the visitors and to have the beautiful prayers they offered up.
God is SO amazing. After patiently waiting for me for years to move back closer to Him, he has surrounded me with His love through family and friends. Praise God, and the wonderful outpouring of love and caring that He has shown me throughout this whole process.
I just want to say to everyone...God doesn't require church attendance to know Him. He is always there waiting to show you His love and grace...all you need to do is have faith and acknowledge Him. He knows we are flawed and doesn't ask for perfection...all he wants is for us to rest in His abiding love.
I will continue to blog my journey through chemo and beyond...thanks for sharing the journey with me.
Namaste.
Jan
Then Teri, Isabella, and Wendy (Isabella's god mom and my adopted daughter) came to visit. What an awesome day!
Kevin (a good friend) and Mark (Isabella's god dad) came separately late afternoon the day of surgery. Though I was groggy and dozing off during our conversations, it was great to have the visitors and to have the beautiful prayers they offered up.
God is SO amazing. After patiently waiting for me for years to move back closer to Him, he has surrounded me with His love through family and friends. Praise God, and the wonderful outpouring of love and caring that He has shown me throughout this whole process.
I just want to say to everyone...God doesn't require church attendance to know Him. He is always there waiting to show you His love and grace...all you need to do is have faith and acknowledge Him. He knows we are flawed and doesn't ask for perfection...all he wants is for us to rest in His abiding love.
I will continue to blog my journey through chemo and beyond...thanks for sharing the journey with me.
Namaste.
Jan
Surgery
Had a bilateral mastectomy on the 29th of September. Surgery went well and the best news of all is that the lymph nodes were not involved at all -- YEAH!! The best part of that is that they didn't remove any so my pain level is really quite minimal...although I am taking the pain pills because I don't want to find out the hard way that it is more painful than what I think!
I wasn't sure what I would feel once I looked at my chest...meaning I wasn't sure if the drastic nature of the surgery would hit me at that point. There wasn't long to wait to find out...doctor came in the day after surgery and removed what bandage I had. Now there is just paper tape covering the wound...and then of course the drains. I suppose I would describe my chest as "lumpy" -- which the doctor said would eventually go away. It is one big bruise and is a bit concave. After wearing bras for 44 years, it is odd to be "flat chested"...but it really wasn't a shock to me.
My surgeon's partner came in yesterday to check me out for release. He asked why I had chosen bilateral since the cancer was only in one breast. I told him because of my triple negative status and his response was "That was a good choice then!" So good to have my decision re-affirmed.
Will see the doctor in a week and hopefully will have the drains removed...though they aren't as bad as I was expecting. It is like having temporary boobs at waist level. LOL!! For those of you wondering...I haven't yet lost much weight...I suppose part of that is because of the fluid still accumulating and the swelling. Will keep you posted as to how much boobs actually weigh (mine at least -- Dolly Parton's might be a WHOLE other story!!).
I wasn't sure what I would feel once I looked at my chest...meaning I wasn't sure if the drastic nature of the surgery would hit me at that point. There wasn't long to wait to find out...doctor came in the day after surgery and removed what bandage I had. Now there is just paper tape covering the wound...and then of course the drains. I suppose I would describe my chest as "lumpy" -- which the doctor said would eventually go away. It is one big bruise and is a bit concave. After wearing bras for 44 years, it is odd to be "flat chested"...but it really wasn't a shock to me.
My surgeon's partner came in yesterday to check me out for release. He asked why I had chosen bilateral since the cancer was only in one breast. I told him because of my triple negative status and his response was "That was a good choice then!" So good to have my decision re-affirmed.
Will see the doctor in a week and hopefully will have the drains removed...though they aren't as bad as I was expecting. It is like having temporary boobs at waist level. LOL!! For those of you wondering...I haven't yet lost much weight...I suppose part of that is because of the fluid still accumulating and the swelling. Will keep you posted as to how much boobs actually weigh (mine at least -- Dolly Parton's might be a WHOLE other story!!).
Thursday, September 16, 2010
Oncology Visit
So the next step in this process was to see the oncologist. Liked her a lot. She is going to use my case at the next tumor board because there is some rarity to my case -- guess that sort of makes me a celebrity! LOL
Looks like I will most likely have chemo over the course of 5 months and that it starts about a month after surgery. She reassured me that they have some great drugs in their arsenal to combat nausea and vomiting (I sure hope so!) and that I will lose my hair. The good part is that insurance will pick up the cost of my new "hair". Just ordered a couple of wigs and scarves to keep my little bald head warm. (Since I love scarves, I will probably be wearing those the most.)
The hardest part of all of this is all of the things that need to be taken care of prior to surgery. This is really the first time I dislike being single because there isn't a significant other to help with all the details...everyday there is something else I find that needs to be done. I am grateful that Teri is there and is helpful, but it isn't quite the same.
While I am very positive and have faith in God, I feel I need to say something for all my friends and relatives. Please pardon my abruptness...but, everyone needs to understand and not be afraid to admit that I may die from this. There...I said the "d" word. Yes, there are great new medicines -- but not for my type of cancer. Even if there were...they don't really know what the outcome will be...it IS in God's hands. Like I said in an earlier post, I am OK with whatever the outcome.
Life throws us some funny curves. Remember to let the people you love KNOW that you love them and really take a look at your life. Is it the life you want to lead? If not, change it. Life is much too short and we just never know when that final bell will be rung.
Namaste.
Looks like I will most likely have chemo over the course of 5 months and that it starts about a month after surgery. She reassured me that they have some great drugs in their arsenal to combat nausea and vomiting (I sure hope so!) and that I will lose my hair. The good part is that insurance will pick up the cost of my new "hair". Just ordered a couple of wigs and scarves to keep my little bald head warm. (Since I love scarves, I will probably be wearing those the most.)
The hardest part of all of this is all of the things that need to be taken care of prior to surgery. This is really the first time I dislike being single because there isn't a significant other to help with all the details...everyday there is something else I find that needs to be done. I am grateful that Teri is there and is helpful, but it isn't quite the same.
While I am very positive and have faith in God, I feel I need to say something for all my friends and relatives. Please pardon my abruptness...but, everyone needs to understand and not be afraid to admit that I may die from this. There...I said the "d" word. Yes, there are great new medicines -- but not for my type of cancer. Even if there were...they don't really know what the outcome will be...it IS in God's hands. Like I said in an earlier post, I am OK with whatever the outcome.
Life throws us some funny curves. Remember to let the people you love KNOW that you love them and really take a look at your life. Is it the life you want to lead? If not, change it. Life is much too short and we just never know when that final bell will be rung.
Namaste.
Tuesday, September 14, 2010
Surgery Scheduled
Got the call today. Surgery is scheduled for September 29th. I go in the afternoon of the 28th to get injected with dye, then back the morning of the 29th for surgery. Will keep everyone posted.
Namaste
Namaste
Monday, September 13, 2010
Surgical Consult
Surreal. Finally received the complete core biopsy results.
Diagnosis: INVASIVE DUCTAL CARCINOMA WITH APOCRINE FEATURES AND ASSOCIATED LYMPHOCYTIC INFILTRATE, INTERMEDIATE TO HIGH NUCLEAR GRADE, NOTTINGHAM HISTOLOGIC GRADE 2.
In addition to that diagnosis, the cancer is triple negative. That means that it is not receptive to estrogen, progesterone, or HER2.
What all that means: it is a more agressive cancer and there isn't a targeted therapy for it.
Saw a surgeon today...meeting with an oncologist on Wednesday. Will be scheduled for surgery soon and will post a date as soon as I know. I will be getting a double-mastectomy with chemo to follow.
So...that is from the logical side...now from the emotional side....
OMG...it is pretty surreal. My faith is strong and I truly believe that whatever the outcome...it is ok. While y'all pray for me, please also pray for my family -- that they have the strength and faith needed for the road ahead.
Diagnosis: INVASIVE DUCTAL CARCINOMA WITH APOCRINE FEATURES AND ASSOCIATED LYMPHOCYTIC INFILTRATE, INTERMEDIATE TO HIGH NUCLEAR GRADE, NOTTINGHAM HISTOLOGIC GRADE 2.
In addition to that diagnosis, the cancer is triple negative. That means that it is not receptive to estrogen, progesterone, or HER2.
What all that means: it is a more agressive cancer and there isn't a targeted therapy for it.
Saw a surgeon today...meeting with an oncologist on Wednesday. Will be scheduled for surgery soon and will post a date as soon as I know. I will be getting a double-mastectomy with chemo to follow.
So...that is from the logical side...now from the emotional side....
OMG...it is pretty surreal. My faith is strong and I truly believe that whatever the outcome...it is ok. While y'all pray for me, please also pray for my family -- that they have the strength and faith needed for the road ahead.
Monday, August 30, 2010
Final Biopsy Results
My nurse practitioner just called and the final result is that I have Invasive Ductal Carcinoma (IDC). The tumor is just 1 cm so it is Stage 1 at this point because the ultrasound didn't show involvement of the lymph nodes. Final staging won't occur until surgery when they look more closely at the lymph nodes.
The good news is that this is the most common kind of cancer, with 80% of diagnoses falling in this category.
We are looking at 4-6 weeks before I see a surgeon at MD Anderson. In the meantime, I will be looking at options.
Keep the faith!
The good news is that this is the most common kind of cancer, with 80% of diagnoses falling in this category.
We are looking at 4-6 weeks before I see a surgeon at MD Anderson. In the meantime, I will be looking at options.
Keep the faith!
Friday, August 27, 2010
Living Faith
Have you ever just "known"? I did...and thankfully I followed that feeling. On August 24th, I was diagnosed with breast cancer after an initial radiologists report of "everything is normal". Because I was concerned that I had inflammatory breast cancer -- the rare, really bad kind of breast cancer -- I just knew I couldn't take his word for it. MD Anderson came to mind. I felt that if they said I didn't have it, I could believe them.
I self-referred and was seen within a week. The Nurse Practitioner I saw didn't feel I had IBC; however, she did feel something in the other breast. I was scheduled for more mammograms and ultrasounds, with biopsies if needed, on the following Tuesday (August 24th). The radiologist was certain what was being seen on ultrasound was a benign lesion but was going to biopsy just to make sure. When he came back in and said it wasn't all benign and they needed to do a core biopsy...he was so caring and shocked that it came back something other than benign. I wasn't.
The Nurse Practitioner was surprised too. Funny, I reassured them both I wasn't surprised because my faith in that "knowing" is what had brought me there.
So where am I in the process? Waiting. She said she would submit me for a surgical appointment but that it would be late September before I was seen...which is ok because we have to wait for the results of the core biopsy. I should hear something by Monday. So in roughly 15 days I went from "all clear" to "you have breast cancer".
My choice of treatment was made back when I was a teen. Everything I have learned in the intervening years about medicine and cancer treatments only serves to solidify my earlier decisions.
Double mastectomy (without reconstruction), no chemo nor radiation, holistic health protocols only.
The one thing I want to make sure everyone understands is how very strong my faith is. I don't need to hear how I will beat this or how many advances here have been in its treatment. You see, I believe in God and His abiding love. However this turns out is ok because I ask for His will to be done in my life. Don't pray for healing, pray for His will. Do I want to live? Of course I do...but I am truly ok if that isn't the outcome...after all I will be going home (just a little sooner than expected).
Namaste!
I self-referred and was seen within a week. The Nurse Practitioner I saw didn't feel I had IBC; however, she did feel something in the other breast. I was scheduled for more mammograms and ultrasounds, with biopsies if needed, on the following Tuesday (August 24th). The radiologist was certain what was being seen on ultrasound was a benign lesion but was going to biopsy just to make sure. When he came back in and said it wasn't all benign and they needed to do a core biopsy...he was so caring and shocked that it came back something other than benign. I wasn't.
The Nurse Practitioner was surprised too. Funny, I reassured them both I wasn't surprised because my faith in that "knowing" is what had brought me there.
So where am I in the process? Waiting. She said she would submit me for a surgical appointment but that it would be late September before I was seen...which is ok because we have to wait for the results of the core biopsy. I should hear something by Monday. So in roughly 15 days I went from "all clear" to "you have breast cancer".
My choice of treatment was made back when I was a teen. Everything I have learned in the intervening years about medicine and cancer treatments only serves to solidify my earlier decisions.
Double mastectomy (without reconstruction), no chemo nor radiation, holistic health protocols only.
The one thing I want to make sure everyone understands is how very strong my faith is. I don't need to hear how I will beat this or how many advances here have been in its treatment. You see, I believe in God and His abiding love. However this turns out is ok because I ask for His will to be done in my life. Don't pray for healing, pray for His will. Do I want to live? Of course I do...but I am truly ok if that isn't the outcome...after all I will be going home (just a little sooner than expected).
Namaste!
Monday, February 1, 2010
Settling
One of the most important concepts of contemplative living is that of living in "unified relationship with oneself" because without that unity, it is impossible to achieve the balance of living "in unified relationship with God, others, and nature." I have to know myself before I can know others and become part of that wonderful sea that is humanity.
I am reminded of something from the movie Runaway Bride — the female lead, played by Julia Roberts, immediately "liked" whatever her prospective husband liked and yet had no idea what she herself liked apart from him...right down to how she liked (or didn't like) her eggs.
We have all done that to some extent so that we could fit in. But fitting in isn't about liking something because someone else does...it is realizing that we are like a huge jigsaw puzzle where each piece, with its own unique shape, has its perfect spot.
We need to understand our uniqueness so that we can embrace it and take our place "with ourself, God, others, and nature" without settling for less than we are as imperfectly, perfect creations of God.
Namaste.
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